My spoonie journey

jessy_wyers_feeding tube

Jessy's Story

Belgium

Age: 25-36

A little bit about my journey:

My Diagnosis

Sarcoidosis, gastroparesis, fibromyalgia, dysautomia, PCOS, IBS

Time to Get Diagnosed

From a few months to a few years

Year I was Diagnosed

2018

Sending Love to

Hospital I'd Recommend

University Hospital Leuven, Belgium

This is my story:

In november 2017 I got a gastroscopy that showed there was a strange mass/tumor on my esophagus, between the trachea and my heart. I have had increasing pain in this area for several years but my GP kept telling me it was heartburn, so I took heartburn medication for a few years. Late 2017 the pain got unbearable and I only was able to swallow liquid food. Afterwards I had the gastroscopy.
I got referred to have some others tests and scans to find out what that thing was. After the first PET-scan they discovered that my lymph nodes where very visible. At first they thought it was cancer, luckily after a few more test and the removal of a small lymph node in my neck, they discovered it was a disease called sarcoidosis. Which is characterized by small collections of inflammatory cells in different parts of the body, in my case especially in my lungs.
Then in June 2018 the tumor on my esophagus got removed. The surgery went well and I thought everything would get back to normal. The first weeks after my surgery I could still only eat liquid or soft foods because the wound on the inside had to heal. When I could start eating normal foods again, I discovered I had some weird new symptoms. I could only eat very little, never felt hungry, felt full after a few bites, was nauseous very often and had a lot of abdominal pains. After a lot of doctor visits, tests and medications they found out I had gastroparesis. Probably because of the tumor removal surgery. I had lost so much weight (more than 10kg) so I was glad I got a feeding tube placed to get my food in.
The time in between the gastroscopy in 2017 and the operation in 2018 I also developed other symptoms like muscular-, joint- and nerve pain. At first everything was devoted to the sarcoidosis, a few years later it seemed I developed fibromyalgia due to the excessive amount of stress my body had to endure.
I also had some other diagnoses over the years like dysautonomia, PCOS and IBD. All those things combined was and still is a big impact on my life, I wasn’t able to do my work so I had to quit, I have lost friends but gained even more and discovered a online world of fellow spoonies, I picked up some old hobbies and even find some new ones!

Let’s play 20 questions:

The song that keeps me going is:
I never leave home without my:
Phone and my emergency tubie-kit
My go-to feel better movie is: 
Anything Disney
If I was in the hospital, the celebrity I would most love to visit me would be:
When I need to relax, I:
My favorite food is:
The quote that keeps me going is:
Keep going, keep growing
When I need a laugh, I:
Meet my pets (or favorite stuffed animal):
Pip (a small chihuahua with the biggest heart) & Kos (the sweetest rescue dog from Greece)
My hero is:
My boyfriend
When I’m having a down day I binge watch:
My favorite book to get lost in is:
I want to be best friends with:
The thing I’m most proud of:
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The new friends I made
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Words of encouragement that I’d give to my fellow warriors are
Follow my journey: https://www.instagram.com/jssy_w/

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